Saturday, April 2, 2011

caught unaware with my ribbons down..

  It is that time of year again..you know..where we are supposed to be "aware" or "More Aware"..or perhaps "spread awareness"...Time to tweet and blog and join face book events..and generally talk to the same people you do all throughout the year.  Yes-Autism awareness month is once again upon us..It is time to take off the brown ribbon of colo-rectal awareness month(March)  and don the blue or the puzzle piece one for autism (move over colons! Autism is in town)..or the green one for IBS awareness (that's too is in April..along with Alcohol awareness(red ribbon), and sexual assault and prevention awareness(teal ribbon) and a myriad of things we ought to be aware of-each with coinciding ribbons) . What to wear what to wear..

  I know without a doubt that when I walk into my children's school next week-there will be many puzzle piece ribbons..Well meaning individuals who are saying Look!"I am aware- I have a ribbon! I know someone with autism!"(Hey-just because I know people with colons-you won't catch me wearing a brown ribbon! The same goes for autism) .... I got a call from the school yesterday. It seems that Oscar was being teased. About what? I don't know. The only reason we do know about this is because one of his friends brought this to the attention of a teacher.  It was suggested that another child or children may have been making fun of Oscar's stimming. For reasons beyond ridiculous-I am not allowed to know who this child/children was/were or what exactly it is that he/she/they/they did. Only that he/she was/were firmly dealt with. No, I was told that it would be up to Oscar-(who may or may not be aware of what it is that happened) to tell me. That's right-put it on my son who has struggles with pragmatic language.  I stated that Oscar-was well aware of everything that goes on in his day-but, it might take him as much as a month to process it-and let me know. I then asked whether or not the other child/children  knew that Oscar was on the spectrum. I was told "no."..I asked what the kids at school were taught about autism..I was told "I don't know".. So where does that leave my boy?  Is he becoming the elephant in the room?   Oh sure, he might stim and giggle inappropriately, flap and "eee"-but we can't tell anyone why..can't explain any of it..no, somehow that would violate his privacy No, we'll just let him be who he is and not explain anything when somebody notices. Are you freaking kidding me? We can't explain that there might be a reason behind the things that he does-we'll just let other kids think he's weird. So, while we are being internationally "aware"-we are locally not going to acknowledge..and instead rely on assumption-and maybe a ribbon.   We'll just "assume" the other kids will figure it out?   As my fourth grade teacher -Sister Catherine Marita always said "Assuming makes an ass of you!" she also said "Your cruising for a bruising"-but that's a post for another day..

  I am sure that many will  say "But this is why we have an awareness month!!" "This is why it is so important!!"..Sure, we can talk and tweet and blog about acceptance or a cure (depending on where you stand) we can say that more research needs to be done, more supports given, accommodations offered..We can argue and sign petitions or not-yell about experience or inexperience and point of view and privilege...we can take a month and wear a ribbon....until next month when the topic changes (along with the ribbon). I don't negate the need for any of these things. I'm just saying that one month and a ribbon do not convey what my kids live every day. It doesn't even come close.

  Oscar came home from school yesterday in a messy mood. He told me that his day had been "all mixed up" (*sigh* part of this is my fault-I mixed up lunch boxes-and one does NOT interfere with Oscar's snacks!!) and that he was bullied at recess. Someone wanted his attention and he didn't want to give it. Now, I have no idea if this is the "incident" that I was called about. (believe me, I WILL find out) But I will say this-the boy he spoke about has issues of his own. Reasons for behaving the way in which he does. It does not excuse his behavior-it does however, help to explain it. Which goes a long way towards understanding.  

  Three of my four kids are on very different places of the spectrum-with Oscar being the most affected (for lack of a better word)  Oscar knows that he is different-he is aware.. He knows that most people don't "stim" like him..or flap or say "eeee". He knows-As do the people in his life. They also know that he is caring, and kind and very very funny. What some people need to understand-is why he does some of the things he does.There is a big difference between awareness and being aware. My kids don't need a ribbon or a puzzle piece or a color-they don't need a month...they need twelve..and they need it forever.

  So today, I wore my pajamas( all day)-as it was a snow day and the kids were home from school. (yup-just when we thought spring had sprung-mother nature played a nasty April fools joke..I'm so not laughing) Tomorrow-I will wear whatever is clean. Because awareness isn't a color-or a month.  It is every day.

18 comments:

Casdok said...

Well said :)

Lizbeth said...

OMG Kathleen-poor Oscar and you. They do the same thing at our school-protect the other kid--I mean I get it, when I found out my son was bit (yes, I said bit) I went unhinged. But I sleuthed the kid out and she's got her own set of problems too---doesn't make it right but helps me not want to bite her back, as much...

I hope awarness comes from watching you every day with the kiddo's and not just once a month.

PS--I fell out of my chair laughing at your comment over at my place!!

Life in the House That Asperger Built said...

Great post, Kathleen. All excellent points. ((()))) to you and Oscar.

K- floortime lite mama said...

Kathleen
You made such excellent pointsMany hugs
I dont mind autism - ( how odd that sounds ) but I cannot bear the thought of R being teased or hurt
Are you going to talk to his classroom about Autism
One of our fellow blogging mamas - mom-nos - I think - did

Big Daddy Autism said...

Yup. The idea behind this month is good and all. And it is beneficial to get some awareness going. But, come May 1st and August 7th, and every other day after this month is over, my boy will still be on the spectrum while every one else will put their ribbons away for another year.

Btw, when you find out who bullied Oliver, send him my way. Oliver's 300 pound, tattooed, shaved headed blogging-uncle Big Daddy will take of it. Oliver rocks!

Jen said...

Have missed reading your blog and this is a brilliant post to come back to:) Hope it pans out ok, if Big Daddy is indisposed just give me a shout! Jen

bbsmum said...

There's a brown ribbon for colo-rectal awareness month? Seriously? I can't believe I missed out on that one...

Looking for Blue Sky said...

I cannot do the mental gymnastics that would be needed to understand the logic at the school...awareness is just the start, and even awareness has to start with those close to us who love us and our kids, as I'm struggling with this weekend x

Diane said...

Very well said. I'm feeling a lot of that today. I wanted to support all the folks who seem to care so much, so I put on my blue clothes and turned on my blue lights and changed my Facebook status, but nothing is really any different for my family. It's just another day. I hope it does make some difference for someone out there. For me, the moments when I get to share some new piece of information with someone aren't purposely created by me. They happen unexpectedly, and I do try to make the most of them.

My son's life at school has been better since more people have been aware of his having autism. He even talked about it openly in one of his classes, which makes me feel like he's become more accepting of this aspect of himself.

I was afraid there would be a stigma when we started telling people our kid had autism , and I'm sure there is to some extent, but there was more stigma involved in him behaving so differently without anyone having an explanation. Many people just seem to need a solid reason to overlook or forgive some behaviors - an "acceptable" reason in their minds not to judge. It's hard for people to be understanding when they aren't allowed to know what's going on.

Hope things get better for Oscar. My own son has had most of his peer difficulties at school with kids who have their own "issues". I feel bad for those kids at the same time that I really need for them to leave my kid alone.

Lynn said...

I've already seen kids mock Audrey's flapping and eeee-ing and she's only 6. I'm thinking it may be a good policy to not tell me who is making fun of her because I will eff someone up but good. Man, your story really irritates my bowels. What? There's a month for that? Whew!

Big Daddy Autism said...

D'oh!!!! I meant Oscar not Oliver.

Rachel said...

All incredibly well said.

Other kids having "issues" doesn't mean that they can't be taught to behave themselves. All God's children got issues. I grew up in a violent and dysfunctional family, and I've never bullied anyone in my life. In fact, my experiences just made me more sensitive to other vulnerable people.

kathleen said...

@ Casdok-thanks :)

@Lizbeth-Oh I know!! My first reaction is to kick some ass! Sadly, I do understand the schools action-they are in a precarious position. They have to protect the privacy of ALL the kids. I am very open about Oscar's autism-many parents with in a similar situation are not. So it is up to me to do something-because the schools hands are tied. Just for the record-he does have some very incredible and dedicated people around him. They are allowed to only do so much-it is up to me to do the rest.

@life in the house-thanks ((())) right back at you.

@K-floortime-I DO know what you mean! :) I am going to tey and work with the school ((()))

@BigDaddy-uuuummm..I'll be sure to tell Olivers mom if I ever meet her! HAHAHAHAHAHAHAHAHAHAHA!

@Jen-I have missed you too! Thanks..yeah-BigDaddy might be busy helping "Oliver" hahahahaha..

@bbsmum-I know! Do you think that they were just being honest? Or were they trying to be funny? I prefer the latter..:)

@bluesky-it's the laws that need to be changed-or wiggeled around. In this case it is up to me to bring awareness..

@Diane-Exactly! Yes-keep writing-keep telling your families story..That is the best kind of awareness. :)

@Lynn-shall I sign you up for next years ribbon..I think that they have a "Moment of flush" instead of a walk..:)

@BigDaddy-heehee..:)

kathleen said...

@ Rachel-thank you. :) yes-everyone can be taught..and learn and grow. The past is not always an indicator of the future..that's for sure.

Stephanie said...

Excellent as always!

Personally, I'm skipping any kind of awareness activity. For my family...autism is and making a big point out of it with blue lighting or what-not...nope. I've got more than enough with the everyday and the work and the big things and the curve-ball little things. Every day. Advocacy--every day--sure, but an awareness month. Nope. Every day little and big things seem to work so much better to me.

hatesocks said...

I did the light it up blue thing (although it ended up looking green...whatever). I agree that this is a year round, life long thing for us. I don't harbor any ill feelings to those too busy or not interested.
I just personally felt like it couldn't hurt anyone to use a blue light bulb for a couple of days.
I'm so confused by all of this controversy.
We have breast cancer in my family. Come that "month" we wear ribbons and raise awareness. Why wouldn't we do the same for my little one?

* I seriously hope this isn't sounding accusing or angry. That is NOT even close to what I am trying to communicate. I honestly am confused *

kathleen said...

@Stephanie-thanks :) yes-the day to day..the everything and anything..life!!

@hatesocks (I do so adore writing that :) ) No worries! I don't see it as a controversy..it's just that (I might get long winded-sorry!) there are too many ribbons. Most are for diseases-many of them fatal-which autism is not. I am all for awareness..but from my experience-awareness does not equal understanding. As I used in my example-my son can be surrounded by people wearing ribbons..and still be teased because of his stimming. They can be "aware" they just can't talk about it when it matters. The connection between the ribbon and my son isn't made. That doesn't honor my him. A ribbon or a light does not represent any of my kids. The people who are "aware"-and have fundraisers..etc. are already involved with autism(i.e. it affects their life somehow). But my neighbor-or a stranger on the street? They might know what the ribbon means..but unless it is in their life..what's it to them? How does them seeing a ribbon or a light raise anything? Then I think of my oldest boy-who is on a very different place on the spectrum. (i.e.-he needs minimal supports-will be able to live independently etc.) Although he is aware that he has difficulties-he also sees that other people do too. To him this is just the way he is. The idea of a ribbon is insulting to him-his thoughts are that he is more than autism.He would much rather be known for his drawing..
I hope that this made sense..cooking dinner at the same time as writing..*sigh* Oh yeah-I hope that I didn't give the impression that I was against people participating in this months events!! That wasn't my intent. :)

Anonymous said...

Very well done - a great post that makes alot of sense! Love, Ei